I recently had a flare so increased from 6.5 to 11mg for 3 days, 10.5 for two days, 9 .5 for one day, 9 for one day, 8.5 for one day, 8 for one day, 7.5 for one day and 7 for 5 days then tried to decrease back to 6.5 but had to add two mg later that day. Next day I went back to 7mg. I stayed there for 6 days and began to decrease to 6.5mg slowly but my thigh muscles feel as though they've done some hard exercise and won't release and neither will the muscles at the top of shoulders/base of neck. These are so tight it feels as though they are squeezing on a nerve. However, I can move my arms freely. This week I continued with the decrease (3 days 6.5 and 4 days 7 on DL's taper) and nothing is freeing up. I don't feel any fever; I was feeling a bit week last week but now just tight muscles and this trapped nerve feeling.
I don't know whether this is PMR or something else. I will take some ibuprofen and see if that helps - just looking for guidance/experience. I really do not want to increase again so should I just wait this out? My ESR and CRP readings were very low after testing but I had been up at 11mg and was on my way down so I wonder if the inflammation was so low because of the higher dose.
This illness is very 'wearing.' Thank you everyone.
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Miserere
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Not sure to be honest - but your way of dealing with the flare is not the way we would have recommended - you need the higher dose consistently for 7-10 days to really get things back under control. So would say maybe you didn’t do that. We also suggest once you have dropped back down, to stay there for a month before you consider restarting your tapering.
Sounds to me as if you have rushed the whole thing, which maybe is why you are struggling now..
Maybe try painkillers for a couple of days, but certainly don’t continue with tapering for now - you can just repeat the current week [as many times as necessary] and see what happens.
Thanks DL - yes, my own fault but so keen to finally get below 7mg. So fed up but will have to take what comes. I've just responded to PMR pro - will a 2mg increase be enough if I need to do that - I'm going to stay at 7mg for a few days and see if it settles first plus try some painkillers. I'm glad the arms are still moving and I went for a 1.5mile walk this morning - I'm OK once I get moving but when I stop I get so stiff.
Thanks for your advice - I'll follow it this time .........
Yes, I should know this - it's my own fault. So keen to reduce. I will try the painkillers and then, if that doesn't work, increase - by about 2mg? Is that enough? Gosh, this thing is .......
Your title is post-exercise stiffness - but I don't see any mention in the text. What exercise do you suspect may be involved? If it is post-exercise aches, increasing pred rarely helps.
Sorry - the stiffness feels like post-exercise stiffness - as though it's two days after I've run a marathon. In terms of exercise I walk every morning and the thighs do loosen but then tighten up again after resting.
The trouble with continuing to exercise when you have potential DOMS (delayed onset muscle soreness) is that the muscle fibres don't get a chance to heal and that may make the stiffness continue longer term. Have you tried a few days rest? Or at least with only very gentle stretching?
Possibly not if you didn't have PMR - but it sets different parameters.
But if not, that suggests something else going on but you don't seem to have benefitted from more pred do you? If more pred was the answer, that first few days of your flare control attempt would have been better.
I suggest you do some stretching exercises as soon as you get back from your walk. There are probably lots of stretches for your quads on line or on U tube but basically either standing or lying on your front bend one leg and grab the foot and pull it back so your thighs are in line and your foot is pulled towards your bottom until you feel a stretch then hold for at least 20seconds then repeat with other leg. Hope this helps
I did benefit when I increased to 11mg - the pain went - but I can see I didn't stay there long enough and quickly dropped back down to 7mg where I had been OK. I think, again, as I've tried to drop below 7mg the pain and stiffness came back again - I should have stayed at 7mg for at least a month. It seems to be the figure I just cannot get below.
Then that is likely to be the dose you need - and it is probably absolutely the limit. But you are now going to have to get on top of it and resting a bit might help alongside the proper flare protocol.
Chastened member - but thanks so much for your advice. What would we do without this forum and people like you and DL? I keep highlighting it on other sites and FB - it's such a great support.
Hi Miserere! Are you doing the stretching bit on waking or after resting before doing things like going for a walk? A kind of warm-up. Also some massage after a walk. Like my dog does!
Hi random901 - I usually stretch first thing, before I go out, and have never had a problem. I rather think it is PMR - I remember now my first sign was an inability to relax my glute muscles and not understanding why. It feels the same with my thigh muscles.
My Rheumy said, and I wrote it down! ‘Any stiffness treat as PMR’. He is right as I have discovered. I have to fight an overwhelming desire to get off Pred and end up just making it more complicated.
Just a comment - I wish my doctor would give me enough prednisone to have on hand for proper flare protocol (I have asked). I always have to cut the flare protocol short, as otherwise I run out of prednisone before it is time for a refill. Just happened again.
Perhaps next appointment I can take the flare protocol document(s) with me and explain to her that that is why I request more prednisone than my 5 mg per day dosage, which clearly is not enough to begin with, (and which I'm now supposed to be down to 2 mg in three months.....). It just ends up getting me nowhere and more prednisone is taken in the long run due to not being able to handle the flares properly! Sorry, just venting - it's so frustrating!
Always worth a try.. and if you are flaring regularly at same dose, then as you rightly say it’s too low. Not exactly rocket science - so why don’t some doctors ‘get it’.
Hi, and thanks for your comment. I know. So frustrating. But I'm going to try! I really don't want to take methotrexate, which she says is the next thing to try, although she's agreed to let me think about that. Big. Sigh. Now I will search for threads on this forum regarding methotrexate, as well. And I never used to take so much as an aspirin in the olden (or younger!) days.....
Is that your GP saying that? Or a rheumy? Prof Sarah Mackie is horrified at the idea of introducing methotrexate for patients who are at about 5mg and below. Fair enough if you are stuck higher but often all it does is add another drug and its adverse effects for the sake of 1 or 2mg pred.
Thank you so much! It's my Rheumy. I certainly need to do my research, and I intend to read the literature from this forum. I truly don't want to add another medication and I think my best bet right now is to educate myself more.
Your rheumy can - but so many GPs start going on about "another drug" when it isn't up to them. The fear of pred on the part of many doctors makes our management so much more difficult. They are impatient and create problems as a result.
I can understand your frustration - my GP leaves me completely alone and fills prescriptions when I request them - so the complete opposite. Not sure which is worse sometimes.
I started getting quad stiffness/ache when I dropped to 6mg (and it didn’t lessen when dropped to 5.5 then 5). My rheumy said it is often the large muscles that are symptomatic first (quads being in that category). She also mentioned steroid induced myopathy (I’ve been on pred 6+ years), to which tapering down pred dose being to alleviate symptoms. For some of us that isn’t an option.
I’ve also recently started a new job that has triggered adrenal insufficiency symptoms for 3 weeks! I started at 5 and ended up at 5.5 after the burst but was still feeling ill. After the second pred burst I’m settling in at 6mg and it seems to be fine. I’m also getting more comfortable with my job duties so that helps having a lower stress level.
Sometimes it takes a few tries to find the “sweet spot/dose”. It’s the yo-yo of up and down though that can make it more difficult to manage the PMR. If it were me I’d stay at 7mg and get bloodwork done. Staying a half mg above the dose when symptoms started May be the best place to park for now.
Trying ibuprofen will at least rule out PMR if it helps. We have to be detectives sometimes with the overlapping symptoms. Good luck!
So did you continue to decrease the pred despite the stiffness in the quads? Did they get worse/better? Also do you mean that steroid induced myopathy will improve as you reduce the dose?
I can understand the stress of starting a new job and really hope that you will begin to enjoy it more with time and as you get to know colleagues etc. It's never easy and can be a slightly anxious time. Do you mean you had to increase dose twice and eventually you were able to stay steady at 6mg? I am following the flare protocol and plan to stay at 7mg for at least a month before trying to reduce to 6.5mg again. I doubt my GP will do more blood tests as he's just done some. I did try the ibuprofen and it didn't help but I do have a trapped nerve in a shoulder which is not helping.
Yes I continued to very slowly taper down from 6 to 5.5, then 5. Stayed there 4 months…had sore quads all that time.
Treatment for steroid—induced myopathy I believe is reducing/getting off steroids as it is determined that the steroids (usually taken long-term), cause the myopathy. I did find this after a quick look online:
“Chronic corticosteroid myopathy is usually reversible over months if the drug can be withdrawn or the dose decreased.”
I also had muscle weakness along with the quads aching, but no balance issues.
Yep, I did two pred bursts and landed at 5.5mg the first time, but still was I’ll with adrenal insufficiency symptoms. The second pred burst I stopped at 6mg which seems to be ok.
I get bloodwork every 3 months (used to be monthly for 5 years!). My CRP seems pretty accurate and if I get a reading of 10, I’m usually flaring. I’ve stopped tapering previously when my CRP was elevated and feeling the return of PMR symptoms (that start as niggles, usually the back, left part of my neck and quads).
The folks I work with are compassionate and funny. They are all positive and work together as a faith community). All the best!
I'm glad to hear you are doing OK. I hope to get to 5mg and stay there for a while if I can. It is just so hard for me to reduce below 7mg at the moment. I have now increased to 12mg in the hope that if this is a flare it will deal with it. Adrenals seem OK at the moment (fingers crossed).
I have been on 12mg for three days and thighs are a little easier but shoulders still can feel very tight - as they would if you were feeling really stressed. With some movements the tingling and numbness can shoot down the arms and if I cough I feel a short burst of tingling in the hands. Now there can be some pain at the front of the shoulder with some movements. Other than that the arms move freely (weird), so I am doing some somatic exercises and some yoga movements as I think some movement is better than none.
Initially I put the neck pain down to reading so much. We have largely given up on television and read or listen to radio in the evenings and I get through quite a volume of books. It could still be that.
I have only had bloods done three times in 3.5 years and as they have just been done I doubt they will do them again so soon. It is getting harder here in the UK to even see a GP or nurse - at least where I am.
I am just finding it very hard to make out whether it really is a flare or something else. I shall continue with the protocol and hope for the best. Glad to hear you work with good people!
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